Insecurities
Not sure if this is the right place, but maybe some of you can relate.
I've been experiencing pains and fatigue since I was about 14. After bloodwork and talks with a psychologist, I was diagnosed with CFS/ME at 17. At 18 I was considered 'healthy' after cognitive behaviour therapy. And yes indeed, I didn't feel the complete drainage of energy on a day to day basis. I did still experience the pains though. But they said it would get less over time. Well, that didn't happen. If anything, they got worse.
5 years went by where I tried to ignore my body. I was healthy, so I shouldn't appoint myself that way. I would just laugh about the silliness of my body or beat myself up about not trying hard enough. This summer I saw a documentary about undiagnosed illnesses, that somehow gave me the confidence to try just one more time and visit my GP. After my bloodwork came back clear again, she referred me to see a specialist. To my complete surprise, the neurologist took me seriously and told me at my first visit that he believed I might have an auto-immune/muscle disease and he will do all the tests he can.
After all these years of ignoring and not believing there was anything going on, I'm now struggling to find out where I stand. On the one hand, I am so relieved that the doctor is taking me seriously and there might be something going on after all. But on the other, I'm so afraid of getting the hit of turning it out to be 'nothing'.
The next exam is at the end of November, but I'm busy with this whole thing in my head continually. I'm a bit of a controlfreak and this is just yet another thing my head likes to search control over, but can't. I know I can't do anything at this point, other than to reach out. So, I guess this is a part of reaching out?
I get it. One of my misdiagnoses was myofascial pain syndrome - basically something that can develop into fibromyalgia or can go away. Decades of serious symptoms and just pushing through them until I found out it was something serious.
I'm currently going through active diagnosis seeking again for something else. It can be so time consuming the tests and appointments and then it's wait and see where it feels like nothing is happening. Besides going to the appointments, giving the best information to the doctors and others you can give there's not much within your control.
And then with getting the diagnosis itself - there's usually anxiety leading up to that, I know I want a 'real' diagnosis (a syndrome isn't a real diagnosis to me, it's basically you have a grouping of symptoms, but there's no conclusive tests or mechanism that's known behind it) but then don't want it to be too serious either.
And all of the above is going on without treatment or else just some treatments that are based on symptoms only such as painkillers and often feeling fairly unwell with all the usual life stuff to still manage.
I don't really have much in terms of smiles and rainbows for you during this period. We're here whenever you want to drop in. I do find some enjoyable distractions can help too. I hope it doesn't take you too long to get a diagnosis and that you're satisified (best word I can come up with) with whatever it is.
